Wednesday, February 20, 2013

Our experiences with Cleft Palate repair

I did a ton of searches on the internet over the last year to read other peoples experiences with their child's cleft palate and the repair.  I found a lot of different information all over the place.  I wanted to jot down a few of my experiences with Audrey's cleft palate repair as a reference for others who may be readying to go through the same thing.

-Wear dark clothing the entire time.  I had heard this and wore a black tee and sweatshirt the day of surgery, but hadn't planned to need to wear dark colors the 2nd day onward.  But I definitely needed to, so wore the same tee the entire time at the hospital.  Even on day 6 post-op, she still drools blood during her sleep, so dark bedding and clothing would be good to have to reduce stains.

-We've always put Audrey to sleep with this seahorse and she seemed to like it so we sent it back with her during the surgery.  Well apparently it was a great decision because it was the first thing she reached for as she was waking up and she has wanted it played continuously for the days after her surgery.  It has had such a calming effect on her.  Now when we go into her room in the morning, the first thing she wants us to do it turn it on and carry it downstairs with us.  So if your child has a favorite toy or lullaby item, send it to surgery with him or her and hopefully it'll have the same effect ours did.  We did take some other familiar toys and books to the hospital, which she played with very briefly.  She just wasn't in the mood and really just wanted to be soothed the entire time.

-Audrey has to wear her no-nos (arms restraints) for three weeks.  Different doctors have different time frames.  I discovered in the hospital that having colorful covers for the no-nos is nice - we were given some at the hospital that had been tie-dyed.  Apparently a family of a daughter who'd been a long-term patient at the hospital dyes men's socks to give to patients for these covers and it's been really nice.  I'm thinking of buying some and dying them myself - they'd be pink of course!

-a handheld blender will be your best friend.  I bought this one at Costco (for $20!) a few weeks beforehand and am so glad I did.  I have used it for everything so far and it's way easier than lugging out my food processor constantly.  I'm wondering how on earth I made baby food without one of these for so long.

Like I mentioned previously, Audrey is on a puree/liquid diet only for three weeks and then soft-foods only for an additional three weeks (again, different timeframes from different doctors appears to be common).  Her weight and feeding has always been such an issue for us so I'm really trying to think of foods that she likes but can be easily eaten now.

Foods I've been feeding Audrey:
-infant oatmeal mixed with milk
-ice cream
-chobani yogurt
-regular full-fat yogurt blended with fruit
-pureed soups
-mashed up bananas and avocados softened with milk
-refried beans, mixed with milk
-puree of sweet potato/chicken/grapes
-mashed potatoes, thinned with milk
-pureed fruits, vegetables, prunes

What I didn't know
- the breath.  Oh my goodness, her breath.  I didn't know that her breath would be so bad after the surgery.  I know this can happen with an infection, but really her breath has been this bad from the very beginning.  It's a sign of how much I love her that I'll still kiss her and cuddle her cheek-to-cheek when her breath is as rank as it is now. 

-the clinginess.  Audrey's always been a mama's girl, but she has been so needy and clingy lately.  There are very few times throughout the day where she'll be content without me there.  I see glimpses of her usual self occasionally, but in general, she's just been very clingy and mopey

-the bleeding.   Like I said above, she still drools blood in her sleep, so I'm washing sheets every day.  It's getting more and more diluted, so I think it will hopefully be coming to an end soon

Every day Audrey is getting better and better.  I think every child and every repair is so different.  I was expecting two weeks of up-all-nights, crying, etc but her sleep was back to normal when we came back home.  We did wake her up to give her tylenol for the first 4 days or so to keep our timetable of giving her pain meds every 6 hours consistent.  But her sleep was fine.  Maybe because her cleft was primarily in the soft palate, but our experience seems to be much better than others have been.  We feel very fortunate so far and are so happy to have this behind us right now. 

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